Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

I've had a number of trauma injuries over 45 years of life which have resulted in some significant nerve damage. Although I've seen many Specialist there has been no specific type of neuropathy diagnosis, although most is peripheral, because there's always been more pressing issues to contend with which steers Investigations in other directions.

I had a spinal injury 25 years ago and fractured 3 vertebrae after a fall on a working holiday in England. At the time although I knew I'd hurt myself I continued to backpack with a 25 kilo backpack around Europe. Hindsights a great thing but when we're young we believe we're infallable. A spinal fusion followed 6mths after I returned home. I suffered nerve damage and I've had 3 dorsal Column stimulators implanted over 20 years to help with nerve pain.
I've had a number of other injuries which resulted in ongoing nerve problems. I broke both ankles (at different times) which were pinned and put in casts. The plaster had to removed with both due to severe nerve pain affecting the external parts of my ankle. I couldn't stand to have anything touch my ankle for at least 6 mths, no shoes, no sheet/blanket and at times even having my foot in water whether it be the shower, bath, pool was excruciating. Lots of desensitisation work to help my alter my bodies response to stimulus of any sort.
I had severe type 2 diabetes for which I was on insulin for over 5 years. I'm happy to say this is now controlled through diet and lifestyle change and I no longer have any medications to treat this.
I have moderate degeneration of thoracic and cervical spine with neuralgia affecting my strength and body's response (over sensitive or sometimes lack of sensation) to stimuli.
I also have a Chiari Malformation which was diagnosed after a head injury. I stood up and became dizzy, fell and was knocked out on the TV cabinet on the way down. It's believed the impact forced my brain through my skull and into my Spinal canal. A previous cranial CT before the accident did not show a Chiari which is how this reasoning was attained. In addition to Chiari it is suspected I have Syringomyelia (Syrinx or cysts on the spinal canal) which affects my strength and alters many sensations sometimes causing intense pain other times resulting in paralysis. The Syrinx if not treated appropriately may continue to cause irreversible damage. Because of my dorsal column stimulator I have been unable to have MRI scans which has meant some diagnosis can not be ascertained. The decision has been reached to remove the device so MRI's can be taken which will happen in the next couple of weeks. I will then fly interstate in Australia to have decompression surgery and possible fusion of cervical spine. They will also decide how to treat the Syrinx. I have facial neuropathy which results in severe facial pain that brings me to the ground it is so severe. In combination with pain I have paralysis in my face, again my face responds in different ways to stimuli.

My team of specialists are somewhat baffled by the complexity of my conditions but they are slowly being able to bring it a together and gain a better understanding of what's going on and why. That's it in a nutshell, there's more to it but these are the basics. Hope this gives a bit of insight

I feel exactly the same. If all I can accomplish re: CRPS and related neuropathy is increasing awareness, it makes it a little easier to accept my journey. Thank you on the other side of the globe.

Wow @sallymagint, your words are so amazingly inspiring... Because it’s so true.... You know something is wrong and you kind of feel like no one is listening to you and it’s all in your head. WOW so many people suffering in this world. Yet so many Doctors unless you’re in you death bed, feel like it’s just a small problem, without realizing how much it’s affecting your everyday lifestyle.

Hello @nanaalways59 -- welcome to Connect. I think you have expressed very well why a person needs to be their own advocate. I think the more we can communicate how we are feeling, what's going on with us and how it's affecting parts of our life, the better the doctor can diagnose and treat or refer us to a specialist. I think doctors can be overwhelmed at times and I'm not sure it's possible for a doctor to know everything that's going on with a patient unless they specialize in whatever ails you. I'm not a doctor and have no medical training or background but I really don't believe a person becomes a doctor without some sort of inner desire or drive to help people.

I have had several doctors that I thought could have done a better job helping me when I was younger by asking better questions for me to answer...but (yup, there's always a but ☺) looking back what if I would have asked more of my own questions. I think if I would have been a better advocate then, I may have gotten better treatments and helped with my diagnosis.

Keep asking questions!!

John

Hi All,

I am new to the group. Wondering if anyone has rapidly progressive PN. Based on my biopsies I have short fiber, long fiber, motor and autonomic PN. All of my doctors have not been able to identify any cause. In November, I was traveling independently around the world working on climate change and stopping deforestation with some foot symptoms. Then my hands became painfully numb and a few months later my face and head started having PN symptoms. Would be interested in hearing from anyone who has something similar and if they were able to reach a plateau. Mine seems to get worse on a weekly basis. Thanks for any info.

Hello @articmark,

Welcome to Connect. I know you must be frustrated not being able to find the cause of your PN. I have idiopathic small fiber PN which the neurologist thinks is possibly hereditary. Did your neurologist have any guesses as to the cause?

My PN started in my toes and bottoms of my feet and it was 20+ years before I bothered to find out what was causing the PN. I knew it was nerve damage but was always told there is nothing they can do to fix it which is why I put off seeing a neurologist and having an EMG to diagnose my PN. They can only treat the pain symptoms with drugs and I only have numbness with mine so there was not much they could do for me other than tell me I have small fiber PN. I have no medical training or background but I've never heard of PN progressing so fast so I'm wondering if there is something else going on healthwise.

You mentioned you were traveling around the world working on climate change and stopping deforestation. Were you around any chemicals that might have caused some of your symptoms?

Hoping some others may be able to share their experience with you of rapidly progressing PN.

John

My doctors think that I have inherited neuropathy for some sensory and autonomic issues that I've had since childhood, but think there is likely an autoimmune cause of the rapid onset, but they can't find proof. Fighting with BCBS to get IVIG to see if it helps. Anyone have experience with IVIG?

@arcticmark, I am tagging a few members who have discussed an IVIG in a post and may have information they can share with you. Please meet @bburleson1 @gratefulone @mllucas @mllucas @ginifuller @captnick @kdp3186 and @5134177246 -- can you share your experience with IVIG treatments with @arcticmark ?

John